posted
After suffering with brain fog/dizziness/tinnitus for nearly 4 months, I'm not sure what to do. I have started self-treatment taking 400mg Doxy /day for the past month. My plan was to keep taking this until the end of the month when I have my first LLMD appt. just to get me ahead in the game a bit.
I was hopeful that I would see some light at the end of the tunnel after a month of treatment, but honestly I really haven't. Lately I honestly feel like I am getting worse. It's been difficult to wake up every morning, and I feel so detached lately. It's making work extremely difficult as my productivity has fallen off entirely too much.
Out of desperation, I went to an ID doc here a few weeks ago in TX and she actually didn't seem that bad. I think it's because my WB was CDC positive, but still. She actually acknowledge LD exists here (wow!). She wanted to put me on 4-8 weeks of IV treatment as my issues are strictly neuro. Immediately I was scared of going with IV and would much rather stick with orals as long as they worked. I have seen several other people here with similar symptoms get better on orals alone. Now I am starting to warm up to the idea.
Should I go for the IV treatment? At least to start? Is it as scary as it sounds? I don't know how much more I can stand working like this. I feel so weak and like absolute crap. I don't know if it's a herx or what, but I just feel so run down.
I figured that if IV could at least let me see some light that that would be enough to push me through all of this treatment. It's been so hard lately living like this. I swear I cry at least once a week just because I am so afraid that I will never see my old self again. It sucks so much because life was so good. We just had our first child and I was on the up-and-up at work. Now I can't even play with my son, and I am so afraid that I will lose my job. I even got desperate and tried some Lexapro the other day to counter my depression, but the initial side effects were too much for me to handle right now. Oh man... sorry for the sob story sidetrack.
What do you think would be a good idea? Would the IV treatment really help at all? I am just hoping for a jump start... I really, really need to feel better here. Even if I have to do orals for a long while to keep things at bay. I am obviously still planning to follow up with my LLMD w/wo the IV stuff.
Posts: 20 | From TX | Registered: Nov 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Before going the IV route, I would check to make sure you know all that you are dealing with. (Speaking from one who had over 6 months of IV rocephin.)
Make sure you know all the pathogens that you are sick with. It seems like you have an ID doctor willing to work with you...that's great.
What were your WB results? Which lab? Do you have co-infections? Have you been tested for other viral pathogens such as HHV-6, EBV, enterovirus? Some websites to look at: www.enterovirusfoundation.org and www.hhv-6foundation.org.
I would not go on IV until I knew what I was dealing with. It is expensive and has it's risks.
As it turns out I have both viral and bacterial pathogens causing my problems. So, that is why it is important for you to know all that you are dealing with. IV rocephin won't help you if viruses are part of what is making you ill.
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would stick with an LLMD. The problem is, once the IV ends in two months, most ID doctors will say you're stuck with your remaining symptoms. I have seen this happen with a friend of mine.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Oh, I will definitely see my LLMD regardless. I just didn't know if the promise of IV covered by by insurance was worth it or not... even if just for a few months.
I have only been on abx for a month, so maybe it's normal to feel crappy? Oh and my IGM WB was done by IGeneX with around 5 bands positive. I don't know... I am leery on the whole viral co-infection thing as I don't really have many symptoms, but I will ask about that. The 3 I listed are it. They are just so debilitating.
Like I said, it would just be nice to see the fog/dizziness lift a bit just to know I am on the right track. Am I just being too impatient???
Posts: 20 | From TX | Registered: Nov 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hey Grim...I know how you feel.
Here is what I would do...if you can..hold out until you see the LLMD. If he or she says "go for it" then go ahead and do it. You are right...2 months of IV guaranteed by insurance is something that is hard to turn up.
But listed to six regarding the risks. I have heard of many who had their diagnosis of lyme ripped away after no improvement.
There is another guy on here (nybasketball something) who has terrible brain fog. IV didn't help him and he was finally (just this week) diagnosed with Babesia.
So..it may not JUST be lyme.
If you absolutely cannot hold out, then go for it.
Have you gotten worse since starting doxy / flagyl? If so, it could be a herx.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
I'm not quite sure if I have gotten worse, but I know the dizziness/spaciness has not gotten much better.
I guess the body aches and fatigue could be related to a herx, because it has been about a month since I started treatment. Isn't that when herxes happen?
Yeah, maybe it is babesia. It just sucks that I have to wait another 3 weeks to find out. I'm not quite sure how I can get my ID doctor to hold off since that appointment is next week. I really don't want to tell her I am seeing a LLMD at all.
If it is babesia or a co-infection, is it common to treat that first before going further with the Lyme treatment? I'm assuming that I will not improve much in 3 weeks (I hope I am wrong, though), so I guess I'll see what my LLMD has to say. I really, really hope and pray that I can get over these neuro symptoms soon.
Posts: 20 | From TX | Registered: Nov 2010
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posted
i successfully got rid of all my lyme symptoms with doxy alone, and i know thats rare. a low dose in fact. i also had fatigue, and severe dizziness and brain fog that wont go away. it got much worse and turned into other symptoms that really do debilitate me. it is not lyme in my case, it is a co infection of babesia most likely. you need to see an LLMD
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
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